Feelings, emotions and epilepsy
Let’s be honest, you probably didn’t plan on your university suitcase having ‘epilepsy’ in it. Having epilepsy is more than just having seizures. It can affect every part of your life and every aspect of you: physical, mental and emotional. While you might recover from the impact of seizures, you might not feel OK with your epilepsy, or how it feels to live with it. You might want to know where you can get more support.
As a young person, you don't really know what it is. I was having a lot of tests, like the brain scans and consultations and people going, “Well, is it her or is it something going on?” … just my confidence went downhill completely, ’cos obviously sort of when you're, when things are happening to you that you don't know what on earth the hell is happening, then it's very difficult.
There’s no right or wrong way to feel about epilepsy. How you feel about it might change from month to month, or from moment to moment. It may depend on how often you have seizures and how they affect you. It might also depend on how those around you feel about your epilepsy, and what emotional support you get.
Talking about it
You may feel as though no one understands what epilepsy is like or how it feels to have it. You might want to talk about it or you might want to shut down and not even think about it any more. If your epilepsy is getting you down, talking to someone might help you. It doesn’t really matter who you decide to talk to, as long as you feel you can trust them and you think they are good at listening.
Get in touch with other people
It can be really helpful to talk to other people who have epilepsy and to share experiences with them. This can help you feel that there are other people ‘out there’ who understand what you are going through. Here are some places you can get in touch with others:
- Listen to other young people talking about their experiences of epilepsy on the YouthHealthTalk website (opens new window).
- Call our confidential helpline, it can give you the time and space you need to say what you want, to let off some steam or to get your thoughts in order.
- The Expert Patients Programme runs 'Staying Positive’ courses (opens new window) for young people with health conditions. The courses cover lots of topics from getting the best from your appointments to self-confidence and how you may feel about your condition.
It is not about the epilepsy any more, it is about my life and epilepsy is only a small part of it.
Epilepsy Society is grateful to YouthHealthTalk and the young people featured on its website, for allowing us to use their quotes.